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10 living your best life with parkinson’sTake some time to reflect on how you like to learn new information, whichmay mean reading, listening to podcasts or watching educational videos,talking with someone who has been there or a combination of approaches.Consider what resources have been beneficial for you and those that havenot, and when you may need to step back from immersing yourself in PDinformation. Your PD healthcare team, support groups and the Parkinson’sFoundation Helpline (800-473-4636) can be great places to learn moreand can tailor information to your preferred way of learning, whetherwritten, oral or visual. You can also ask your neurologist, social worker ora local PD nonprofit organization if they are aware of any upcoming PDeducational symposiums in the area that may be beneficial to you.Making Treatment DecisionsWhen reading about PD, you may see different medications that yourneurologist never mentioned to you or different techniques or surgeriesthat have not been discussed. Treatment decisions and medicationchanges are commonly based not only on the neurologist’s observationduring your exam, but also your own report of how your symptoms arechanging with activities throughout the day and impacting your life.One of the ways to understand whether it is time to discuss a new PDmanagement approach is to ask yourself these questions before eachneurology appointment: Am I able to do everything that I want to do in my life right now? Do I feel that my symptoms are currently well-controlled by my lifestyleand medications?“I often suggest creating a list of things that you would like to do, orcontinue doing, in the next five years,” said Dr. Browner. “This could beengaging with your kids or grandkids, playing golf, taking a trip, attendinga family event or volunteering in the community. Whatever you choose,these activities should be fulfilling and meaningful. After making the list,periodically read it over to see whether the symptoms of PD have beeninterfering with participating in these activities and meeting your goals, orif you can purposefully make the time to do those activities. This can be ahelpful way to assess how you are doing and determine treatment goalswith your neurologist.”

The Parkinson’s Diagnosis 11Sitting With Uncertainty“What can I expect?” is one of the more burning questions for peoplewith PD, especially those who are still new to it. Providers are oftenasked to pinpoint the “exact stage” of someone’s Parkinson’s diseaseor what a person’s symptoms will look like in a specific number of years.We crave understanding and control – about our body and our futures.Unfortunately, there is no crystal ball for PD and healthcare providerscannot predict what any one person’s unique set of symptoms, response totreatment or progression will look like. Each person’s Parkinson’s journey isunique, which can be both scary and comforting.“What if?” questions are natural, but limited answers can create feelings offrustration. While it may be uncomfortable, allow yourself the space andenergy to sit with these uncertainties and all of your feelings related tothem. It can also be empowering to remind yourself that you are in controlof many aspects of your PD. By committing to an exercise routine, takingyour medications as prescribed, finding the right care providers, buildingyour support system and being adaptive, you can positively influence yourquality of life with Parkinson’s.Responding to the DiagnosisEvery person who receives a PD diagnosis responds differently to thenews. Some people react with anger or depression, perhaps feelingresentful that this happened to them, hopeless about what the futuremay hold or regretful that they did not better appreciate life before PD.Some wonder whether certain past lifestyle choices or factors “caused”their PD. Others respond with denial, which can look different fromperson to person. For some, a diagnosis may mean refusing to talk orlearn about PD, holding unrealistic expectations about treatment orprogression or seeking out opinions from multiple doctors in a search forany possible explanation for their symptoms other than PD. Yet othersmay respond with positivity, or even a sense of gratitude or relief, inhaving a specific diagnosis, knowing they were not “imagining” symptomsand having a better understanding of what they are dealing with andmore definitive answers and treatment options.How someone reacts to their diagnosis depends on a variety of factors;these can include individual characteristics, such as age at diagnosis,whether they are still working and the strength of their support system.A person’s prior experience with Parkinson’s can also play a role in their

12 living your best life with parkinson’s The Parkinson’s Diagnosisreaction. Someone who has known a person with PD who struggled withtheir symptoms, or someone who attributes the death of a person withPD to the disease may fear a similar experience. The way in which thediagnosis is shared can also have an impact. For example, a person whois incorrectly told by a doctor that “Nothing can be done” for PD mightrespond differently than someone whose doctor thoughtfully answersall of their questions, explains the diagnosis and treatment options andconnects them with resources.A person with PD and their care partner may react and cope differently.Family members and friends may feel entirely different from their lovedone who is adjusting to the diagnosis. How someone views and feels aboutthe disease will also change as time passes and their experience andsymptoms evolve. Take a moment to reflect on how you reacted to thediagnosis and how your perspective of Parkinson’s may have shifted overtime, for better or worse, since diagnosis.Sharing the DiagnosisUnfortunately, there can still be stigma associated with PD. This isprimarily due to general lack of understanding of the disease andmisconceptions about how it will progress. This can make people with PDcan be reluctant to share their diagnosis; they may have concerns thatothers might pity or avoid them. Or they may fear PD-associated stigma,stemming from the misconceptions of people unfamiliar with the disease.While education is key to helping others understand Parkinson’s, you getto decide when and how you share your diagnosis. Everyone does this inhis or her own time. Some people immediately tell their friends and familymembers. Others wait until they have come to terms with the diagnosis orthey have symptoms they can no longer hide.

The Parkinson’s Diagnosis 13Jeff shares: “At first I did not want anyone to know I had Parkinson’s. Ithought no one would notice, so why point it out? But after a while Irealized that people did, in fact, observe my symptoms. I had a fewpeople ask why I didn’t pick up my feet, or express concern about myslowness and slightly slurred speech. Then my fear becamethat they would jump to their own conclusions about whatwas going on and would assume it was something elseentirely. I told my daughter first, then some close familyand friends. Very few people seemed surprised whenI finally told them. And, in fact, I was shown anoutpouring of support. I was also surprised byhow many people knew someone else with PD.”Disclosing the diagnosis can be an empowering experience. It provides anopportunity to bust common myths about PD. It is also a way to educateothers about the diagnosis and normalize life with PD. You may want toshare, in your own words, that: It is not a death sentence. There are many treatment options that can help you live a long andfulfilling life. Despite your symptoms, you are the same person you have always been.You may even find yourself feeling more comfortable in your own skinwhen you share your diagnosis; more confident in your ability to advocatefor yourself and better able to wrap your head around the reality of whatParkinson’s means for you.There is no right or wrong way to share about your PD. When discussingyour diagnosis, it is OK to feel vulnerable and not to have all the answers.It is also normal to want to take a break from talking about PD or to wishpeople talked about it more.If you have already disclosed your diagnosis to others, think about howit made you feel. If you have not yet shared this information with many,consider what your hesitations have been and how and when you planto tell people. Deciding when and with whom you share your diagnosismay especially be important and tricky if you are still working. You canfind more about considerations for sharing your diagnosis in the workplacein Appendix B.

14 living your best life with parkinson’sMany people in the early stages of PD wonder whetherto tell others about their diagnosis. Although no one canmake this decision for you, the thoughts and experiencesof others might help:“ I didn’t tell for a long time because I was afraid that the revelation mightjeopardize my job. Also, I didn’t want other people feeling sorry for me andfor my kids.”Diego, 51, eight years after diagnosis“ I think people hold onto the secret longer than they need to because theywant to maintain their privacy and because once you tell, it’s out there andyou can’t take it back. I didn’t tell anyone for several years. Then I sent aletter to some of my close friends, informing them. Once I did tell, I felt likea burden had been lifted and I could get some support.”Barbara, 62, three years after diagnosis“ I told everyone, and it was very liberating.”Jim, 67, one year after diagnosis“ I kept the information from my colleagues and friends for years. It’s hardenough to cope with this disease and to also cope with the tension ofhiding it. When I finally “came out of the closet,” it turned out that many ofmy friends either suspected or knew and were incredibly supportive.It was such a relief!”Joyce, 54, four years after diagnosis“ When people ask about my limp, I go ahead and tell them I have PD.They’re surprised because I am so young. Too many people keep thisdisease a secret because of embarrassment, and I think that hurtsus. The more people who know about PD and how prevalent it is,the more successful fundraising and treatments may become.”Alex, 36, two years after diagnosis“ Telling my 7-year-old grandson helped me the most. He said as long asI could still push him on the swings, it was OK. And then he gave me ahug and ran away to play. He loves me for who I am and is unphasedby my PD. Reminding myself that I’m more than my diagnosis when I tellpeople helps me feel grounded.”Harvey, 77, 12 years after diagnosis

The Parkinson’s Diagnosis 15Chapter Check InMy top three takeaways from this chapter:1. 2. 3. Reflection Questions:If you are a care partner or loved one of someone with PD, you can askyourself similar questions. Feel free to substitute “your loved one” for “you”and write your reflections below.What do you remember about the day you were diagnosed? If you could goback and tell yourself one thing after being diagnosed, what would you say? Who was the first person you talked to about your diagnosis? How did you feelafter sharing? Did this impact how/when you shared the news with others? Where have you gone to seek information about Parkinson’s since you werediagnosed? Has this information been helpful? Is there information that isstill missing for you? What is your plan to get the right information at theright time? If you met someone who just received the diagnosis of PD today,what thoughts or advice would you share with that person?

1616chapter threeCoping withTitleParkinson’schapter xxAs a movement disorder, PD affects people in a physicalway. You may notice your Parkinson’s in how your bodylooks and moves, especially if you have visible symptomslike a tremor. Difficulty performing once seemingly minoractivities you once took for granted, such as buttoninga shirt, can be frustrating. These physical changes caninfluence your mood and even your sense of self. Rememberthat PD can also affect much more than just movement.Sometimes it can be hard to express the non-physicalimpact of living with a chronic disease, especially if youare caught up in keeping up with medications, exercise,appointments, etc.

Coping with Parkinson’s 17The following outlines some frequent coping challenges people with PD share: Unpredictability: Parkinson’s is unpredictable. Symptoms can changefrom day to day and even over the course of a single day. People withPD often say the unpredictability is one of the hardest aspects of thedisease to manage. Factors such as when you last took your medication,how much you slept the night before, your stress level and whether youexercised can impact how you feel. The disease’s unpredictable naturecan make it challenging to make plans; will you be up for sitting throughyour granddaughter’s 3-hour college graduation, having lunch withyour friend next Friday, or taking that cruise next spring you have beenplanning for six months? What you can do: Work on getting comfortable with uncertainty.You may need to find new ways of making plans or, as many peoplewith PD share, learn to “go with the flow” depending on how youfeel on a given day. Sense of control: Human nature is to want to feel in control – of ourbody, decisions, plans and the future. However, a PD diagnosis can forceyou to recognize that you are not as in charge as you would like. This hasthe power to shake your beliefs around health and mortality. It is noteasy to remind ourselves that none of us know what the future holds. What you can do: Take back control! There are plenty of things youcan take ownership of – your exercise routine, how you think aboutParkinson’s and your attitude throughout the day. It might not happenovernight, but every step toward self-empowerment is important.

18 living your best life with parkinson’sCoping with Parkinson’s Independence: Similar to our need to feel in control, it is normal towant to feel that we can operate self-reliantly. We are taught from thetime we are children to learn to function independently in the world.As abilities change during the progression of Parkinson’s people mayneed to ask for, and accept, help. This transition can be difficult and canlead to vulnerable, guilty, sad, scared or angry feelings. People with PDfrequently share worries of burdening their families. Remind yourselfthat these emotions and fears are normal and common. What you can do: Reflect on what independence means to you.Share these thoughts with your loved ones. Consider ways you canstill maintain a sense of independence while also being uplifted throughthe support and assistance of those around you. Lifestyle: We all become used to our lifestyles; whether it’s the activitieswe enjoy, those we excel at, or the time it takes us to perform specifictasks. Integrating medication and exercise programs, coupled with yourunique set of symptoms, may affect your routine or change how youparticipate in certain activities. What you can do: Reconfigure your lifestyle. Rather than cuttingout the things that are hard, make adjustments. Our friend Jeff, forexample, found that while he can still play golf, he may feel more tiredthan he once did and often opts to play fewer holes. He also sharedthat due to his rigidity, he cannot lift his arms as high he once couldand therefore his “golf game is a bit off.” Over time, he has learned tomake adaptations rather than giving up a game he loves, and his golfbuddies are “more than happy to be finally winning.”

Coping with Parkinson’s 19 Roles: As you adjust to life with PD (and the normal aging process),your roles within your household and community may shift, makingphysical and lifestyle changes necessary. You may decide to leave theworkforce. You may cut back on driving long distances or opt to stopdriving altogether. You may need to ask your partner to help you withthings you’ve done throughout your relationship, such as paying the billsor cooking. If you have done something one way for many years or youridentity is tied to certain role (e.g., the family chef, the one who alwaystakes care of everyone), changing these roles can be difficult. hat you can do: Create new roles. If you retire sooner than you wouldWhave liked, look for volunteer opportunities that are less demanding butstill fulfilling. If you no longer have the extended family over for regularmeals, can you organize a regular family walk in the park instead? Identity: How you feel in your body and how you have always viewedyour health are important to how you see yourself and the world. Forexample, if you have always identified as “a very healthy person who hasnever had to take medications,” this will be a big change for you. It maylead you to question why this happened to you if you have always made“the right” health decisions. It is also not always easy to incorporate alabel, such as “someone with Parkinson’s” into your sense of self. What you can do: Reflect on your identity. As things change, it isan opportunity to look at things in new ways. Set aside time tointentionally take stock of the things that you like about yourself, thethings you have accomplished and how you’d like to see yourself movingforward.

20 living your best life with parkinson’sCoping with Parkinson’sWe share these commonly expressed coping challenges not to bring youdown or make you fearful. Rather, we want you to know that if you findyourself confronting these challenges (and you may not), they are a normalpart of going through any type of health and aging-related transition.Most importantly, you are not alone. You are entitled to recognize thechanges and losses, and to even grieve over them if you need to, but wealso want to highlight the importance of adapting and finding healthycoping skills as part of your journey with PD.“ I have learned that I have to adjust my morning routine before workbecause I’m just generally slowed down. Now it takes me an hour and 20minutes to get ready when, for many years, it would take me exactly 50minutes. I have just had to learn to go with it, and to give myself way moretime to do things than I think I actually need.”Karen, 65, four years after diagnosisAdapting to Life With Parkinson’sLiving with a chronic and progressive disease like PD is no small feat. Itis profound and can be life altering on many levels. You may find yourselfwanting to avoid thinking about PD or seeing other people with PD, oravoiding social situations in general out of fear of being viewed differently.Alternatively, you may jump into learning all you can about PD and meetingother people with this diagnosis, or you may be somewhere in between. Howyou experience and react to life with Parkinson’s is normal and unique to you.We hope that you will also feel empowered knowing that how you chooseto live with PD is something that is in your control. PD does not haveto stop anyone from living a long, fulfilling, joyous life – it just takes awillingness to adapt to changes and challenges as they arise. Another wayof thinking about this is maintaining a “flexible mindset.” Adaptation cantake many forms. Like Jeff, you can still play golf but perhaps fewer holesor only in the afternoon because that is when you feel the best. Or, likeKaren, you may need to give yourself more time than you think you’ll needto get ready in the morning. With the right adjustment and assistance, youdo not have to give up important activities or aspects of your lifestyle.

Coping with Parkinson’s 21Tips for healthy and effective coping with Parkinson’s Try to have both a hopeful and realistic attitude towards your life withPD. While you should give yourself permission and space to feel sador overwhelmed at times, try to ba

disease. This book will focus more on the aspects of living and coping with PD and less on symptoms and medications. Briefly, PD is a complex disorder of the brain that involves the malfunction and death of brain nerve cells, called neurons, that produce a neurotransmi